“Alexa, turn on 93.1” I said at 5:45 p.m today after a long day of firsts. New therapists in and out, new Behavior analyst, new routine, new expectations, new anxieties and in the course of all of this I was hit with emails from my sons hearing specialist, another hearing specialist for my daughter from UofM audiology and Aiden’s speech therapist looking to start therapy soon.
The moment the radio turned on I was so relieved to hear music not to mention one of my favorite songs almost on cue. Its then that I noticed the tension in my Jaw and my shoulders in my ears. It was at that exact moment that I remembered that I am a person. I am but one person trying to keep all of this afloat as everyone continues to to drop more on my plate. Today as I stood at the bus stop shivering and waiting for my “typical” children I found myself talking to one of the dads about his sons hockey tournament and It felt good to talk about something other than therapy but then I stood there anxious because there were two therapists at my house down the block that told me I could only be gone five minutes so in my only adult interaction through the entire day all I could think in the back of my mind was, “come on bus hurry up please don’t be late I don’t want to get in trouble”. Sigh, somedays I don’t even realize that I have been holding by breath the entire day.
Finally, after a 9-5 day of ABA, after all 6 loads of laundry were done and put away and after dinner was done I sat down to an empty screen and that same song that came over my alexa and wrote the first three lines and my husband walked in to tell me about his work day. As I listened halfheartedly and tried to focus, I really did try but finally i just looked at him and said, “I cant do this right now. Please, just give me an hour”. He stopped talking and looked at me and said, “I just want your attention” “Sorry, people have needed me all day and I have been pounded from every corner I just need one hour to get myself together”. He walked over and hugged me from behind as i remained seated in the chair and all i could do was feel annoyed and it wasn’t his fault. I’m just on overload.
If I’m honest, and to be frank, I’m almost to the brink of being pissed. I’m angry and I’m frustrated at this whole scene. As I look at my calendar filled with chores, to dos, doctors appointments, my husbands formal work parties I need to attend and a double at work as well as basic every day things I cant help but be angry. I have no time to connect with anyone. I have to ask how much longer I can maintain all of this? What gives? I mean i dont even have a dress for said parties. How am I Supposed to accomplish all of this?
I try to prepare prior so i can be less stressed but here let me show you an example of what happens from an example of this morning. Ok so last night, I bathed all the kids I packed their backpacks, washed all their beds so that they would all be prepared this morning. HA guess what? Sabrina peed her bed last night, Caleb peed his bed last night so now I have two peed beds and dirty kids that I had to re-bathe before school. That’s how it always seems to go. Today around 11 am I went downstairs and cleaned the ABA room so that his second session they could go down there to do therapy but in the course of the 20 minute change over Aiden went downstairs and peed on the futon so I had to again apologize to the therapists that the therapy room was unavailable yet again as I poured the hot water and bleach back into the bucket I had just dumped into the wash tub.
I don’t know, today was just one of those days that I just survived. It was one of those days where the emotion center of my brain turned off to protect itself and after all the work was done,the strangers had left and the music filled the kitchen all the adrenaline left my body and it all came crashing in with a vengeance.
Music has always had a way of doing that. I can always tell when I’m bothered because the radio goes silent and that’s when I know I need to check in with myself. Today was just one of those days that I was so blunted I didn’t even realize it until that man’s soft voice hit my soul and shook me back to life. As if to say, “sue, wake up!”
I guess that’s life in the special needs world. Somedays its okay, sometimes its not okay and somedays you turn off just to survive. Its tough though because no one really gets it. Its tougher still when your spouse doesn’t get it but then again how can he? His role in all of this is different from mine. Its not his fault. Its not my fault. Its not autisms fault. It just is what it is. Tomorrow I will wake up and I will face the day all over again. I will talk to therapists, I will talk to doctors, teachers, I’ll cook, Ill clean, and then the day will be over and I will have yet to have a real conversation with an adult about anything other than someone else’s therapy. I’ll go to bed tomorrow night only to repeat the same cycle the next day and the next and the next. I guess its safe to say, I wonder where I fit into all of this beyond manager. Where am I? Who am I? What am I forgetting? FOR GOODNESS SAKE WHERE ARE MY KEYS?!